Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Monday, May 25, 2009

Be a survivor

For the second time, I'm reading Deep Survival, Who Lives, Who Dies and Why by Laurence Gonzales.  As I read the paragraph below on pages 86 - 87 of the paperback edition, I felt somehow justified about my bad Emergency Room behavior.

Psychologists who study survival say that people who are rule followers don't do as well as those who are of independent mind and spirit.  When a patient is told that he has six months to live, he has two choices:  to accept the news and die, or to rebel and live.  People who survive cancer in the face of such a diagnosis are notorious.  The medical staff observes that they are "bad patients," unruly, troublesome.  They don't follow directions.  They question everything.  They're annoying.  They're survivors.  The Tao Te Ching says:  

The rigid person is a disciple of death;

The soft, supple, and delicate are lovers of life.

Please strive to be an annoying, unruly and troublesome patient.  Question everything.  
Be a survivor.


sue in naples said...

Great post Dusty, I too misbehave because we are forced to... from previus misdiagnosis and pathetically bad medical behavior on physicians and nurses part... if they were competant in the first place we wouldnt have to be this way .... question everything. I went balistic last er visit while waiting for illegals with no insurance to use the er as their personal gp office... i felt the crazier I got the better I was treated so.... the old squeeky wheel saying is tru... and trust no one in the medical community!!!!

Debbie said...

Thanks, Dusty. I'm a great annoyance to my doctors, also. I plan to copy this quote and pass it around.

Unknown said...

But what if you are the kind of person who listens to doctors and obeys their instructions in good faith?

Unknown said...

You all know I'm a rabble rouser in the ER. My husband walks out of the room embarrassed. In the end, I end up being wheeled out satisfied that I got the best care I could.

Meg, I'd say if you listen to a doctor in good faith, you are deeply trusting in a doctor caring about you. My experience is that they don't have time to research our orphan disease and understand it and its treatment. Empathize and care but not be as educated as they could be and give you the best treatment you could get will keep you from operating at your very, very best. Go ahead, be annoying! It's gotten me really, really far!

Anonymous said...

Great post. I turn into a mouse when I see Drs but I have achieved a first. I wrote a letter back to my new Endo explaining to her how wrong she was about certain things she had said. Like 12mg HC is a total replacement dose for ALL woman and the fact that I need 24mg HC is because I have something else weird happening.

I was a real bi*ch and cced it to her partners. That Endo needs to lift her game and get educated - end of story. I am fed up meeting Endos who charge you $300 and are not educated.

We have to misbehave to survive. I don't like having to do this but I prefer living.

Unknown said...

Indeed I am a very trusting person, but I have an entire team of doctors working independently to help me out. And, although I do trust their advice, the best doctor I've had told me this is my life and I need to figure out what works for me. I'm still in the process of figuring it all out :)

Unknown said...

Hi Anonymous, way to go writing a letter! 12 mg HC replacement might be ok for some but if it's not ok for you, it's not! I wonder if the doctor even considers the metabolism from the digestive system through the liver to the blood and the loss of HC?

Meg, you're really lucky that your doctor wants you to work out what works for you! Too bad your docs (and everyone else with multiple doctors) can't get together and work together, rather than independently, to pull all the clues together. How's the tooth???

:) Dusty